The development of a self-ASSESSment decision aid
Research type
Research Study
Full title
The development of a self-ASSESSment decision aid to enable people with haemophilia (PWH) to detect and manage acute musculoskeletal bleeding events utilising ultrasound technology. (ASSESS)
IRAS ID
290017
Contact name
David J Hopper
Contact email
Sponsor organisation
Canterbruy Christ Church University
Duration of Study in the UK
1 years, 5 months, 31 days
Research summary
People are born with haemophilia and it mainly affects males and is caused by a lack of clotting factor VIII (haemophilia A) or IX (haemophilia B). Haemophilia A is a disorder affecting 1:10000 people and haemophilia B 1:50000. Worldwide there are approximately 400,000 people living with Haemophilia.
In haemophilia the blood does not clot normally, leading to bleeding into muscles and joints that can occur spontaneously or as a result of minor trauma. As a result, muscles become weak and joints become painful and difficult to move. When a joint has had many bleeds , a painful arthritis develops by the time they reach adulthood. The pain from this arthritis is often there every day and occurs usually in the knees, ankles and elbows.
The pain people experience during a bleed is very similar to the pain caused by arthritis. People with haemophilia as well as healthcare professionals find it difficult to distinguish between both types of pain. The treatment for a bleed and arthritis is different, which means appropriate treatment is often delayed.
The objective of this mixed methods study is to use a decision tree developed from a review of literature and previous qualitative research investigating opinions of people with haemophilia (focus group) and healthcare professionals (e-Delphi survey) to enable people with haemophilia to detect if they have a bleed in their joint or whether the pain they feel is related to arthritis.
The study will use handheld ultrasound machines following a scanning protocol to look for evidence of synovitis in their joint alongside the clinical signs of a bleed. Patients will be taught the scanning protocol and will scan their joints with the aim to determine if patients can be taught to scan their joints effectively. They will be asked to report any symptoms that may be present due the scan.
REC name
London - Hampstead Research Ethics Committee
REC reference
22/PR/1556
Date of REC Opinion
2 Mar 2023
REC opinion
Further Information Favourable Opinion